Two participants in the Federal Government's compulsory Australian Health Survey say the experience has been deeply intrusive and a stressful violation of their privacy.

A Queensland woman likened the survey process to having Big Brother knocking on her door asking for urine, and said the line of questioning intruded into her grief over the recent death of a loved one.

And a Victorian woman told the ABC News Online Investigative Unit she felt strong-armed into giving private health and lifestyle details to a stranger.

Up to 50,000 randomly selected adults and children are compelled to take part in the survey, which is being conducted by the Australian Bureau of Statistics in consultation with the Department of Health and Ageing.

Aspects of the survey, such as blood tests and urine samples, are submitted voluntarily, but people can be fined $110 a day - or prosecuted - for not taking part or for refusing mandatory questions.

It's not like Big Brother is just watching. He is knocking on your door asking for urine.

The survey, announced in last year's Budget, was described as the most comprehensive research on the health of Australians ever undertaken. At the time, the inclusion of blood and urine sampling sparked headlines such as: "It's the ABS: Come out with your urine sample in the air."

The survey participant from Queensland, who wishes to remain anonymous, says she was deeply uncomfortable with the nature of the questioning.

"I'm shocked that anyone would want a blood and urine sample just out of the blue,'' she said.

"I haven't even given my doctor that sort of thing for a while because there is no need for it.

"Why should the Australian Government know more about my health than I do?

"It's not like Big Brother is just watching. He is knocking on your door asking for urine."

The Victorian participant, who also wishes to remain anonymous, says she was uncomfortable with the interview being conducted in her home and initially sent this email to the ABC.

She said she had initially believed all the survey questions were compulsory.

"I was given the impression that I had to participate in the survey, which I understood to mean that I had to answer all of the questions," she said.

"I felt it was just an absolute violation to send somebody from the Government into my home.

"I don't doubt the information is valuable and I can see the need for collecting it. My issue was the mandatory nature of it. She was utterly non-sympathetic and not understanding of why I didn't want to participate and then threatened me with fines.

"I checked the fine print on the ABS website to see if I really could be fined and I checked my legal position on it.

"In the end I thought, this is too hard, and just did it.

"At that stage I was so annoyed and stressed about it; I raced through it, brushed her off, and wasn't concerned about the accuracy of it because I wanted to get rid of her."

Confiding in strangers

I was thinking, 'you're a stranger, I don't particularly feel like confiding that in you'.

Australian Health Survey participant

The survey commenced in March, and about 15,000 people have completed interviews.

The ABS says about 60 per cent of those interviewed have agreed to provide blood and urine samples - and to date no fines have been issued.

"At what point do we have any privacy left?" the Queensland participant asked.

"They say that they don't force you to let them into your home but the only other option is to answer these sorts of questions outside your house where your neighbours can hear.

"I said, 'I really don't want to take part in this survey'. I'm not comfortable answering medical questions with a stranger."

She says she was asked if she had experienced the death of a loved one recently, and then was asked to rate her level of sadness on a scale.

"I was thinking, 'You're a stranger, I don't particularly feel like confiding that in you'," she said.

"Then they pulled out a tape measure to take my body measurements."

Confidential data

You Said It

The ABC called for feedback on the Australian Health Survey via Facebook. Here's a snapshot of the discussion:

Jess Scott: "I'm surprised it's compulsory! Research like this is extremely valuable but, ugh, being forced to do something isn't nice."

Adam Griffin: "I don't get it. What exactly is the problem? So you have to give a few samples. Get over it people, it's a small effort that you could make that has the potential to improve the way we provide health care services to those that need them."

An ABS spokesperson told the ABC it had received mixed feedback about the survey, with some respondents saying the subject matter was too personal.

The ABS declined to supply the full list of questions to the ABC but said it balanced the need for the data with the burden that supplying information placed on individuals.

"The ABS is aware of the sensitivities around conducting this type of survey,'' the ABS spokesperson said.

"People who participate will be contributing information that will guide future healthcare policies, guidelines and public health programs that will benefit them, their families and the community for years to come.

"The voluntary biomedical measures will provide new insights into chronic conditions such as diabetes as well as heart, liver and kidney conditions.

"The answers to questions asked by the ABS are treated confidentially."

The ABS says most people prefer to conduct the survey at home.

"For those who would prefer to not invite the ABS interviewer into their home we will make other arrangements such as conducting the interview on the doorstep or finding a meeting room at a nearby library, council office, etc.,'' the spokeswoman said.

Not all participants in the survey report a negative experience. Brigid Walsh from Victoria told the ABC she had no problem with the questions and readily participated in all aspects.

"By and large, I was pleased with it, and the ABS was doing it, but I can see some areas where people might be picky,'' she said.

"I regard the survey as important and the ABS has a good reputation."

Email from Victorian participant

Following is the full text of an email to the ABC from the Victorian participant:

I participated in this survey and I DEEPLY resented the intrusion into my home and privacy - to say nothing of the threat of fines should I refuse to participate.

I respect the need to acquire information of this nature and I have absolutely no objection to anonymously sharing my details; I do believe that my responses will inform important health-related policy decisions.

However, I think it was a mistake to set the survey up in such a rigid and intrusive format and I would encourage the ABS to consider that the least they could do when mandating participation is to cause the least possible imposition on those who are selected. Instead, I felt strong-armed into reporting on private health and lifestyle details in the presence of a stranger - who assured me the information was anonymous as she sat in my house, addressing me by name!

Had there been an option to participate (truly) anonymously online, at a time that was practical for me, I would have done so and would have been much more likely to provide accurate and complete answers. As it was, I was so keen to be rid of the ABS representative that my responses were clipped, not considered and very likely inaccurate. I am a very private person and this was a source of genuine stress for me.

I support the need to gather information of this nature, but I object to the manner in which the ABS goes about it.

I think I think:

Neil H:

25 Oct 2011 2:25:20pm

Based on this article, absolutely. It would be interesting to see the list of questions.My question is though, in this day and age, why was there not an option to participate online?! I would never provide answers to some person who knocked on my door, but would happily do it online.

EMH:

25 Oct 2011 3:25:38pm

Having been in this survey I can tell you that the questions were not particularly interesting, mostly about meals, which is why it was not practical to do it on line, the form to be completed needed daily record of each day's meals. I know that doing this online could be done but that would have been awkward for some people involved in the survey.

Tony:

25 Oct 2011 2:25:52pm

Yes, It's invasive.It it in the name of a good cause, Public Health?Yes, it is.Could they have probably found 15,000 people who would volunteer to take part?Yes, they could have.Is there any way to know if the participants are giving false data when they are uncomfortable??None.

Help101:

Dan:

25 Oct 2011 4:14:08pm

Volunteers are not good enough. One of the reasons why these data are so valuable is precisely because random selection of citizens allows truly representative data. The 2 women mentioned in this article, and very likely all Australians with similar health metrics, would have politely declined the offer of a voluntary survey.

In the end, they'd end up with fantastic data on outgoing, healthy Australians who have no reason to feel that their health issues are private (in many cases because they actually have no health issues, especially mental health issues).

I'm sorry Tony, but those data would be next to useless, and I would be in their face complaining that the wussed out and wasted tax-payer money.

I commend the organisers of this study for proceeding with an unpopular, but extremely valuable survey of a truly representative sample of Australians.

Lewis of The Hills:

25 Oct 2011 2:30:50pm

Absolutely, it is an outrageous invasion of privacy. I wonder if the threats of fines & prosecution would stand up if contested in court. What were these statists saying about protecting our privacy from the media just a month ago? What about protecting our privacy from the coercive & intrusive state?

David:

larks:

the government has no right to demand health information, let alone samples of bodily fluids from anyone.

it wasn't necessary to make participation in the survey compulsory to gather the data - no independent researchers are given the right to fine people for not participating in studies.

this goes against basic research ethics, e.g. the notion of informed consent. in this case failure to consent would result in financial punishment.

and although the fluid samples were voluntary i don't find it at all hard to imagine ABS survey collectors trying to give the impression that it was compulsory. this is a sales technique used in many industries - it's about how you word the question.

David:

EF:

25 Oct 2011 2:45:53pm

People should not be compelled to provide specific health information if they are not comfortable with it. Threatening potential participants with fines and prosecution certainly does not seem like the best way to go about this.

KW:

25 Oct 2011 3:39:01pm

The survey is fine. The ABS has always has the power to force people and companies to participate in their surveys. They need to collect data from a sample that represents the population they are studying. We are not developing a police state, this is for the good of everyone and I think people should really calm down and stop being so silly about it. As for this participant saying that her answers were probably inaccurate because she just wanted the woman out of her house. That doesn't really matter. A sample size of 50,000 has been chosen to help and ensure accuracy. The talented people working at the ABS will have no trouble weeding out troublesome responses and other outliers in the data.

davies:

Of course it is an unfair invasion of privacy. Made worse by $110 a day fine and/or prosecution.

How big does government (Commonwealth. State and Local) have to get before we start resisting.

The 99% protests have it part right. We should be protesting against the other 1%, but that 1% should be government and its senior and middle level mandarins.

If you are looking for the 1% that live parasitically off the population, that are the direct cause of wars, inflation, taxes, regimentation and social conflict then look no further than the government and its senior level operatives.

Manfried:

25 Oct 2011 2:17:15pm

They (the ABS) tried to force me once into taking part in a survey (additional to regular Census). They told me that participation was compulsory, but I just dug my heels in and said no, feck off. I got various threatening calls from bureaucrats up the line, but bottom line was this: they backed off and I got no fine.

Sassyandra:

Sign of the times:

MF:

25 Oct 2011 2:18:19pm

Effective public health systems depend on robust population data. This intrusion into your body measurements and fluids may contribute to development of health services for an illness that affects you some time in the future.

Sunny - the real one:

25 Oct 2011 3:17:25pm

I guess, the majority would participate willingly, but a threat of fine invites ill feelings and rightly so.Anyone wanted to measure me, take blood, urine samples, or just push me around arrogantly would have reason for a rather hasty departure. That's a promise.

I think I think:

JRAPQQ:

25 Oct 2011 4:23:49pm

MF, We have been participating in ABS research for decades - and yet we still have inadequate infrastructure (you'd be shocked at the "Goat Track" presented as the main arterial road between Melbourne and Brisbane - North of Port Macquarie is a time-warp back to the WW2 era). Inadequate schools, inadequate hospitals, inadequate Immigration Detention Centres, etc. etc.. I'd suggest saving the Nazi Style data collection and get on with fixing things. The activities of the ABS does not seem to help the Nation progress one iota, rather their data collection contributes mainly to the ABS.

Scientist:

25 Oct 2011 2:20:04pm

On first reading this article, I would say that the participants have given some very clear insight into how the process of this survey worked for them and their circumstances and what parts of the process caused the most difficulty.As someone who works in the field of scientific research and its analysis, I have several observations.1: it is not clear that the subjects mentioned here were able to give consent to the study. This is really a core of getting reliable data. This kind of research comes under the same umbrella as something like the census, which is completed in a much more 'friendly' way that more closely matches the anonymity required to get truthful and accurate answers.2: it is not clear why this had to be done face to face, rather than by a form or online survey.3: if the concern was with accurate data, why was there not an option for the subject to do the survey via an appointment with their GP or another health professional.

It would be very interesting to see the format of the survey in particular the parts/aspects to which the Victorian participant objected. I hope that the feedback from participants is acted upon and a response comes in some manner. Based on my experience with trying to give feedback for the census, I'm not holding my breath!

Kath Nemeth:

25 Oct 2011 3:16:58pm

I completely agree with Scientist. What does not make sense is the fining penalty. With that policy there is no facility for consent. I am certain if this survey was advertised clearly stating it's long term benefits there would in all likelihood be a cross section of the public willing to participate. If there were missing survey samples from certain demographics you could offer incentives or at very least promote strategically to that target market. It bothers me that government agencies seem far too focused on targeting non-compliance rather than encouraging volunteer participation. Why must we always take the punishment option rather than rewarding for assistance?

gazza1:

25 Oct 2011 2:20:17pm

This is disgusting.

It seems like a smoke screen to disguise the lack of action by all governments over the years, to resolve problems associated with our aging population. I recall that decades ago a study was conducted that warned of the aged tsunami to come yet nothing was done - I guess no votes were in that issue.

And now, with people living longer and longer (into their 80s & 90s) and increasing instances of dementia occurring, there are not enough services or homes to look after them.

Nowadays, to get into a reputable aged care facility it costs an arm and a leg. The waiting time to get in is no joke either!

genfie:

25 Oct 2011 3:03:15pm

Oh good Lord, the survey's been run every three years for the past 20 and this particular version would have been in the planning stage for at least two years. Have a problem with it, fine, but what the heck does it have to do with the current government?

genfie:

25 Oct 2011 4:16:40pm

National Health Surveys were conducted in 1989-90 and 1995, and prior to that as Australian Health Surveys in 1977-78 and 1983. The survey in its current three-yearly format has been run since 2001. Google - 2 minutes.

Simon Shaw:

Softdog:

25 Oct 2011 2:22:09pm

The question really needs to be asked is why is it compulsory bugger some people do not even tell there partener some things but you are compelled to tell the Gov't, surelythey could find 60,000 willing participants and were the people picked randomly?

stat:

25 Oct 2011 3:32:41pm

The reason ABS surveys are compulsory is simple- it is an attempt to eliminate responder bias (that is a systematic difference between those who participate and those who don't). It is likely that people willing to participate might not be representative of the population- hypotheses in this regard might include that unemployed people might have more time and be over-represented, or educated people might be more comfortable with research questioning, or people with STDs might be embarassed and choose not to participate.This is not to imply I believe this survey has been handled in the right way, but the methodological rationale is correct.

Claire:

25 Oct 2011 2:24:25pm

I think it is very important to remember that the submission of blood and urine samples is VOLUNTARY. This is an alarmist article which does not discuss the benefits of the survey to community at all. If volunteers were used in this survey then the data would be biased towards volunteers characteristics (as with any survey) and the government could not make policy which accurately reflects our community.

Cranki:

25 Oct 2011 3:25:57pm

Cupol, the ABS runs surveys regardless of who is in office and you'll find that the Libs would/have and will also run surveys of this sort.I agree with Claire above, this is an alarmist article. Volunteers would skew the results as clearly from the comments here civic-minded people are in the minority.

I think I think:

25 Oct 2011 4:30:56pm

For the very same reasons you and Claire cite, the information is not quality controlled. Compulsion will skew results as will voluntary information.

Data of this type should be gathered anonymously from GP databases only. True confidentiality and impartiality can be maintained, a bigger dataset can be achieved, and noone gets their privacy invaded.

It is plainly ridiculous to collect such important information in a door to door manner.

Queenslander:

bj343:

Green:

25 Oct 2011 2:33:18pm

This fills me with outrage and incense, and not the nice smelling incense. If it were voluntary, I would see it as the somewhat justified collection of data for scientific reseach, but this is totalitarian. Fines for not providing bodily fluids or answering personal questions, it's like Judge Dredd without the death penalty.

sbagone:

25 Oct 2011 4:24:32pm

If you look at the FAQs on the survey's website, there is nothng about fines for having to provide bodily fluids, it also outlines what is expected and what the information would be used for. http://www.abs.gov.au/websitedbs/D3310114.nsf/home/Australian+Health+Survey+-+Frequently+Asked+Questions#GenInfo

Dogmatic:

25 Oct 2011 2:33:34pm

YES it is!!... i have had this guy come to my house twice at inappropriate times , he told me i am (household) is selected to participate in this ABS survey, the first time he came, I said, "i'm not interested", he said, "ok you just may recieve a letter from the ABS, & he left happily (no mention of a possible fine etc), i recieved at letter few days later from the ABS that states if dont do it I can be fine.. he came the second time after i recieved the letter, i gave him my Ph no, i said to him to ring me to make a time.... I dont want him in my house, ...nor do I want to answer his questioneer, particulary on the street... will i be fined if i dont do it??

Jason:

ishmael:

25 Oct 2011 2:35:05pm

OK, I don't fully know the nature of this latest intrusion by the ABS but going by my past experience of these people - they need to be reined in and HARD! They appear to operate very much as a law unto themselves, are high handed and litigious (Comply with us or we'll have you in court) - I suspect any benefits gained by some of their intrusions are mainly countered by the distress engendered. In my case I was undergoing a particularly difficult time and a heavy handed ABS was not what I needed...what I gave them eventually was worthless - I made certain of that - so how accurate are results obtained under such duress? Stupid, stupid!!

Megall:

25 Oct 2011 2:37:16pm

It certainly sounds as though it is. A web-based survey would have been more anonymous - there is at least one stranger who knows exactly who you are and details of your medical history. How can the government possibly get useful data in this way? Wouldn't you just say anything to get them out of your house? Intrusion and forceful inclusion will not give accuracy.

Dismayed:

25 Oct 2011 2:37:53pm

I am horrified by this. How dare the Government intrude on people's lives like this. Why couldn't these questions be included in a private questionnaire which could be filled out by participants in private and put in a sealed envelope to be returned. I would NOT provide ANY information to anyone about my health, except my GP. And as for giving blood or urine samples - forget it!!!!!!!!!!

I know which side I'll be voting for in the next election - and it won't be LABOUR!!!!!

bj343:

25 Oct 2011 2:37:55pm

This is terrible. What is the government doing?!? This is not how Australia operates. It's a major human rights violation. Disgusting!!! Sounds like George Orwell's book "1984"! What about my right to privacy? Who passed this crazy law? It's out of control. A.B.S - I say to you - shame, shame, shame!!!

Megall:

25 Oct 2011 3:52:41pm

Actually this is a really good point. Which institutions were responsible for approving the ethics of this? It is difficult to get human ethics approvals in research - who approved this and what were the restrictions (if any).

anon:

25 Oct 2011 2:39:28pm

As a health professional, I can understand the need for research into the health and wellbeing of a cross-section of Australians. This can then help governments and policy makers make more informed decisions about where funding should be placed in either research or healthcare.

However, it does seem that this is a strange way to go about gaining this information. Surely there is a better way. Why not approach a cross section of the country with an option to participate and those that feel it is an invasion of privacy can opt out. And the fact that they do these sorts of interviews in peoples houses is also concerning - surely they could have an area where people could come to meet with the interviewer in a neutral environment that is sound proofed. A public library is not one such space.

I think the ABS needs to rethink their strategy. I know some of their other surveys are done over the phone or on paper/online, so I don't see how this is any different. Respect for privacy is surely an important aspect to consider.

Rattus:

25 Oct 2011 2:39:32pm

Absolutely. There is no need for them to go to houses to get these answers. The whole idea of getting samples is a joke. Doctors publish this kind of information regarding kidney problems etc each year. And its done anomalously. I dont even tell all my family about MY PRIVATE medical issues so why should I have to tell the Government. Its my body, my life. This kind of information can be collected in an anonymous way through the internet or even through postal services. An utter disgrace Australia.

Anonymous:

25 Oct 2011 2:39:42pm

Has the ABS applied for or received ethics approval for the collection of this data?? Participation should be completely voluntary - mandatory involvement in this sort of exercise is a complete invasion of privacy and miscarriage of our civil liberties. If the Australian government wants this data it should be collected from consenting individual by their general practitioners on a voluntary basis and subsequently de-identified to protect patient confidentiality. Individuals should NOT be cornered in their own homes by strangers and forced to provide this information - thought this was a free country??

JackieO:

25 Oct 2011 2:39:44pm

I am a bit gobsmacked about this. Have a friend who was caught up in a similar survey about people with disabilities and she found it very intrusive and offensive as well.Is this information not available through other agency's who already have it or is it covered by confidentiality rules?Were it me I think I would have gone out of my way to provide only what I wanted to say and not necessarily what was real. My business IS my business and not a communal belonging.

Roberto Markham:

25 Oct 2011 2:40:31pm

Firstly to quote Jess Scott: "I'm surprised it's compulsory! Research like this is extremely valuable but, ugh, being forced to do something isn't nice." I think this is typical Labor party coercion to force people to undertake a course of action they may find abhorrent. Secondly should this attempted intrusion come my way then I would see the ABS in Hell before I would participate. As a pensioner of limited means any court action would merely accord me an all-expenses paid holiday in a luxury resort which are euphemistically called "prisons" these days because I would be damned if I would pay any fine for my right of privacy.

NaiveAussies:

25 Oct 2011 2:43:31pm

The ABS has the right to ask you questions, but you don't have the right to refuse. What the ABS cannot control is whether or not you answer their questions "accurately." Lie, people, lie. The ABS bullies deserve no less.

Brad:

25 Oct 2011 2:43:39pm

I also was required to participate in this survey. I have no objection to the idea, but the manner in which it was carried out was just wrong.

The first we knew of it was a knock at the door and then we were told we had been given advance notice of it by mail. If we did receive anything it was addressed "to the household" which we routinely throw away.

Then when times were agreed to for phone calls to arrange times for the actual interview, these were missed by the interviewer.

In the end the information given could not be considered as representative so a total waste of taxpayer money!

Roly:

John C:

25 Oct 2011 2:47:35pm

If anyone came to my door and said I have to give out that sort of information I would be telling them no and then calling the police. How can any government department that deals with statistics compel us to give that sort of information. The indignity of such a request coming from a complete stranger.

Furthermore the ABS supplies statistical data to private companies and universities for a price so they can target their marketing, research and product development, so why aren't they paying us as their prime suppliers of raw data.

sbagone:

25 Oct 2011 4:34:03pm

The ABS provides a range of free data to everyone via their website. Specialised requests are on a fee-for-service basis, whoever requests the data. Data are only released where confidentiality can be assured.

Lou:

25 Oct 2011 2:48:01pm

Absolutely not. I was approached in my home (as a woman living alone) by a burly man who became aggressive, and returned three times to try and pressure me into taking part. I filed a complaint with ABS, and this was taken very seriously. I felt really disturbed by the incident.

Dee:

25 Oct 2011 2:56:31pm

There is no way these people got accurate answers to their questions, if I had been forced to answer medical questions in front of a stranger I can tell you right now I would have been extremely reluctant to answer personal questions honestly!They should have put the questions in an online survey that people could choose to particpate in.My mother loves telling people about her aches and pains, I don't even like telling my Doctor half of my problems.

Andybob:

Miz:

25 Oct 2011 2:57:20pm

As a psychologist, we are completely bound by a code of ethics that says that under no circumstances are we allowed to refuse participants of our surveys/studies the right to withdrawal from those surveys WITHOUT penalty. There are NO exceptions, no matter how important the study is. Hell, we still have to pay participants for taking part, even if they drop out early. It seems that the ABS would rather fine them.

This rule is in place to prevent psychological harm that our survey might bring about. Why should the ABS not be bound by these same ethics, when both medical and psychology professionals are?

Common Sense:

25 Oct 2011 2:58:02pm

I would bet that everyone here complaining about "privacy" would also complain when the government doesn't meet their medical requirements or doesn't have the data to make social policy. It isn't just a case of the 'government' turning up on your doorstep one day - there is due process.

Terry:

25 Oct 2011 2:59:06pm

Disgusting behavior by the govt.If it were me, I'd supply answers to nothing but the mandatory questions and would make up a whole bunch of crap for them.Let them waste their time trying to prove my answers are wrong.

Or, I'll answer your question only if you give me your answer to the same question. Eye for an eye and all that.

Better yet, come back and see me when I actually have time (oddly enough, this would never happen) or pay me for the time you require of me.Still no guarantees the answers would be correct.

Otherwise, fine me. Anyway you look at it, you would NOT be getting any answers out of me.

Common Sense:

bj343:

25 Oct 2011 3:45:56pm

I'm not against development of good public health policy. However, threatening fines for not providing very personal information is an outrage in our democratic country. I called A.B.S. today about this Health Survey, and they said the questions they ask are indeed "very personal and very detailed" (their words). Of course health policy development is important, but we don't live Nazi Germany! We have some basic rights here in Australia (I would like to think they do in Africa too). This type of survey would never get past an ethics committee at any Australian University for obvious privacy reasons. When it comes to my health - PRIVACY is INDEED a basic human right. Everyone knows it - it's common sense!

AndrewK:

25 Oct 2011 3:01:49pm

Excuse me, but I'd like to think I haven't been living in some deep hole for the past twelve months, but where has been the publicity and awareness program to say this was happening, why, when and how.

I would be offended if some public servant turned up on my doorstep and forced me with the threat of fines to answer some very personal questions; and even more so if I wasn't home and my partner and daughter were subjected to this without our prior knowledge. Now I know am reacting only to what people indicated in the article but it does rate top score in my disapproval rating.

Perhaps some lawyer might like to make a comment and indicate whether this would breach human rights and/or is unconstitutional (we know the governments track record on these lately eg. offshore asylum processing.....)

Politically Incorrect:

Incitatus:

25 Oct 2011 3:08:40pm

This government appears to be getting increasingly authoritarian. Fines for not answering questions about one's health! The aims of the survey may well be laudable, and I'm sure that most of us would freely co-operate, but the methods leave a lot to be desired. What Stygian depths will they descend to next?

cp:

25 Oct 2011 3:10:35pm

It is an extreme invasion of privacy and totally unnecessary. I want the ABS to come clean on the commercial vehicles to which this data will be intended. The ABS has been told they need to justify their existence in light of the myriad private companies waiting to to do the work. There is however absolutely no value to this research at all! All the statistics they gather can be inferred or indeed, are already recorded through other avenues. this along with the illegal accuracy check done on the census should be immediately stopped

Help101:

25 Oct 2011 3:52:42pm

Give us your blood then if it is so trivial.

If you want to find out something you can ask politely and nicely, not threaten to fine etc someone.

And why aren't they asking health care professionals who deal specifically with bereavement and the consequences of depression if the department of statistics needs to know something about these topics... surely that would be the intelligent place to ask these sorts of questions.

As opposed to say "gee mate, you look sad, did your dad/mum/wife/child just die, ... yeah?... cool ... i need some info on when you expect to kill yourself over that... what? you don't want to talk to a complete stranger about a tramatic part of your life? really? ok mate you are gonna be fined $110 a day until you do!!!!!!"

James:

25 Oct 2011 3:22:13pm

Wow, this is truly sickening stuff: the government *forcing* people to participate in a survey.

I almost hope they knock on my door: I will refuse, fines be damned. A prosecution would just bring this all out in the open, and I'm sure there would be lawyers lining up around the block to defend the first person taken to court.

EMH:

25 Oct 2011 3:22:25pm

I was included in this survey and having read the article it seems to me to be complete crap. I was not compelled to do anything, I was very politely asked if I would contribute blood and/or urine, which I agreed to do do, and received a $50 pament for my trouble, which was very little. At no time was did I experience anything like a threat, whether implied or otherwise. I always understood that my participation was voluntary and the request for blood and urine was additional to the other part of the survey and entirely voluntary as well.

Interestingly I have recently received a letter and form regardnig the survey. This new form is completely voluntary and asks for information about my experience of the survey. Hardly the kind of thing one would expect from how the survey was described above!

Maybe there are a couple of rougue interviewers out there, or maybe some people have completely misunderstood what was being asked of them.

Stephen:

25 Oct 2011 3:39:49pm

Nice to see a bit of realism and balance in amongst all the hysteria of invasion of privacy rhetoric.

Honestly, how do people think the government can make informed policy if not by collecting data on the current health of the nation by a randomly selected sample? If participation was entirely voluntary then the results would be useless and no better than from a self selecting sample.

The ABS staff act in accordance with legislation made by the government for the benefit of all.

The data collected by an individual staff member is confidential and subject to the restrictions of the Commonwealth Privacy Act 1988.

The data when reported on is aggregated, meaning that individual results are not discussed or disclosed.

Angela:

25 Oct 2011 3:57:56pm

It's interesting that even when the article clearly states that certain questions on the survey are mandatory and quotes the ABS stating it hasn't fined anyone so far, etc. you still think it's voluntary.

The ABS first requests people to respond to surveys. If they refuse to participate, the ABS can put the request in writing and then fine them. This applies to all ABS surveys, as they clearly state on their website: http://www.abs.gov.au/AUSSTATS/abs@.nsf/Latestproducts/1008.0Main%20Features72010?opendocument&tabname=Summary&prodno=1008.0&issue=2010&num=&view=

The fact that you think you have understood that the survey was voluntary demonstrates how the ABS misleads people by politely requesting they participate first, before compelling them if they refuse.

It's not surprising you were asked for feedback. Because the ABS is polite, more people assume they are doing the right thing, that their questions are reasonable and will be used for important purposes. That makes it easier for the ABS to gain people's cooperation - they don't want to fight with all their participants.

Your experience is one of a survey particpant who didn't question the survey and fully participated. Don't assume people who did question it or were reluctant to answer questions weren't treated differently, and not just because of a 'rogue interviewer'.

I'm surprised you were given a payment too as the website states they don't do that, but maybe they made an exception for the taking of bodily fluids!

Rosemary:

25 Oct 2011 3:23:44pm

In reference to the participant saying her answers were most likely inaccurate; I recently acted in the role of Area Supervisor for the Census held on Aug 9th. When people heard that I was doing this job, the majority of them told me that they had never answered questions correctly. This leads to the question, How accurate is the data collected by the ABS? It would be interesting to have a poll and find out the percentage of people who make up answers for ABS surveys. If the percentage is high, this would then lead to the question, Is it worthwhile having the ABS conduct surveys in the first place?

Paul:

25 Oct 2011 3:25:00pm

How can the ABS even think that the results of this "survey" will be worth any more than a Zimbabwe dollar? if you force people to answer questions of a personal nature under threat of a fine if they don't agree, then it should be obvious that the unwilling participants will give more false answers. This then makes me think that the ABS are not interested in the answers to these questions in any case. Maybe this survey is really laying the groundwork to see how many people will voluntarily give the DNA sample, in preparation for a national DNA database. Not that I'm a conspiracy theorist or anything.

Terry:

25 Oct 2011 3:25:33pm

Gotta wonder if the govt. with all these "compulsory" issues such as this, and the so called "voluntary redundancy" offered to the public service recently, is aware of what's going on all around the world lately with people fed up with having their rights undermined.

As for those saying " oh it's no big deal just get over it".. Well.. You are exactly the type of person I will not discuss my private issues with.So why on earth would I want to discuss these things with anyone other than my own doctor.

Granny:

25 Oct 2011 3:28:11pm

Some days Australia seems more like the USSR back in the 60's than the democracy we thought we were living in. I would tell the ABS rep that I have no reason to trust him/her with my personal information and no desire to discuss it with anyone other than my doctor. If the ABS wanted to fine me, let them. I would go to gaol before I would pay it and I would make sure that every politician and every Australian knew about it.

Fen:

magoo:

As a biomedical scientist, I would not value the results of this survey at all. It is a an attempt to get a narrow 'snapshot' of Australian health assessment, but is flawed in so many ways.

(1) There will be no recourse to return to re-assess outliers.(2) There is no guarantee that samples will remain limked to the individual providing them.(3) There is no protection of the urine or blood samples against malicious tampering, contamination or exposure to adverse conditions (extremes of temperature in particular). Samples, particularly urine, that may already have bacterial contamination present, will deteriorate very rapidly unless assayed very soon after collection.

And many others.

This is just one more 'make work' scheme by this illegitimate government.

Sad:

25 Oct 2011 3:30:31pm

I've had one of these extra ABS interviews on a separate subject - not as invasive as this one, but an outrageous incursion into privacy nevertheless. I initially refused, but faced with the threat of fines, I went through with it. Seeing that others have refused and not been fined, I wish I hadn't participated now. In any case, I was so angry that accuracy was probably compromised. Faced with this health interview, I would probably tell them to **** off.

In case you haven't realised it yet, our political system is sinking into a regime that is as corrupt and anti-democratic as some of the totalitarian regimes we decry. The less information you give them, the better.

Joffre2000:

25 Oct 2011 3:32:07pm

Several years ago I forced into a financial survey by the ABS. I resented the manner and especially that I was forced to take part. It was explained that I had 3 choices, answer the questions, or face a fine , or off the the slammer. I took another option (not offered by the ABS), I lied. It was a wonder that the ATO did not knock on my door.

Michael:

25 Oct 2011 3:34:02pm

As disturbing as this must have been for the participants, I can see why this study was designed in such as way. Yes, they could have found volunteers for such an undertaking, so too could they have asked for consent from everyone participating. Unfortunately the nature of such research is that the data must be collected from truly random individuals. By asking for volunteers (or even consent) the selection process may become prejudiced and in fact sample a slice of the population that does not represent Australians as a whole.Invasive as it may seem, I hope people realise that far more good will come of this than the bad that is most evident in the short term.In the future it would seem that the study would achieve much better compliance and be less invasive if the samples and information were collected from the participant's GP, with the participants properly informed and educated (with any questions answered) well in advance to the study taking place.

Neil:

25 Oct 2011 3:35:09pm

Do you really think every single aspect of every action by every department is a Government conspiracy? Lots of things happen all the time taht are just part of normal functioning. All Ive seen above so ill informed and muddle headed thinking about how the ABS works, what the information is used for and how much direct involvement "the Government' of whatever belief has in day to day life.

Easter Bunny:

25 Oct 2011 3:38:00pm

My understanding is that the new aspect of the Australian Heath Survey involving a blood and urine sample is regarded as human research and was approved by a properly constituted human research ethics committee. Ethics committee decisions are guided by the National Statement on Ethical Conduct in Human Research (see NHMRC website for details). Chapter 2.2 of the National Statement requires that participant consent must be voluntary. The rest of the Australian Health Survey has been going for years and is governed by a Statitistics Act dating back to the early part of the last century. This is the part that remains compulsory and apparently it does not have to comply with National Statement guidelines. Those running this survey should have made this clearer because the angst created here gives good research a bad name.

tony lee:

25 Oct 2011 3:41:35pm

Nothing would surprise me with this lot. Once we were a democracy, and now a beaurocratic quagmire building up data bases and invading privacy. The name of the game is to set up another enquiry, & employ another heap of public servants. If this information is deemed useful then ask for volunteers.

James:

25 Oct 2011 3:42:38pm

Yes, this is an unfair invasion of privacy. Asking people to take part is fine but compulsory involvement to give up such personal information to a stranger is not - it is constitutionally offensive. The ABS might even consider asking a persons GP go through the survey to encourage the required people to take part. Such a system would not be difficult to implement (leaving aside government efficiency issues for the moment).

Mr Medved:

25 Oct 2011 3:46:47pm

Nobody is compelled to support a survey like this without their consent. People need to learn to stand up to the Government and simply say, "no thanks". As a sovereign of the Commonwealth you have the power, not a bunch of bureaucrats.

Michelle:

25 Oct 2011 3:52:02pm

I was forced to participate in an ABS survey a number of years ago and also found it an unsatisfactory experience to say the least. At the time a member of the household was suffering from a terminal illness. We expressed a desire to not participate because we naturally had better things to do with our time rather than answer government surveys. We too were threatened with fines etc if we didn't participate. Also, despite the fact I (a female) was the sole named lessee of the premises we were living in and the highest educated and highest income earner, the interviewer tried to insist that the only male in the house (the ill man!) must be the primary interviewee (to provide answers to 'household' based questions). These are just a couple of examples of my negative experience in a compulsory ABS survey. It seems that their style hasn't improved with time!

BJB:

25 Oct 2011 3:53:33pm

This is complete nonsense.

They had better not come around here as I will never answer their questions, pay their fines or whatever else they like to try. I don't think I have felt quite so strongly about any other intrusive actions from the authorities as this. JUST LEAVE ME ALONE.

Besides, with people openly admitting they are not answering the questions truthfully, the results aren't much use. Ah, say the ABS, we adjust for that!

Then why not make it a voluntary survey and adjust those results on the basis that only certain type of people would volunteer.

Here's an idea:

25 Oct 2011 3:55:42pm

Class action time!

Why are we so ready to roll over and purr for the illusion of 'authority'? Every time I turn around I can be fined for some rubbish or other. It's absolute daylight robbery that a complete stranger can legally steal money from me for refusing to be bullied.

It is our right to live with privacy if we choose. I am sick to death of the trend of acceptance in invasion of privacy. IT IS NOT THEIR RIGHT TO KNOW ME!!!!

Don't do the survey. Don't pay any 'fines'. Take the bastards to court en masse! Or learn really fast how to straight faced lie because we are only at the start of the bully era.

infidel:

25 Oct 2011 3:58:15pm

Australia is indeed moving towards a 1984 style surveillance state at an ever increasing speed. This is only possible because still too many people believe that we need the state in its present form with its ever inflating bureaucracy to look after us and as such their intrusion into every citizens right can be justified.

We have become a land of compulsions with fines that go beyond any reason, of which the compulsory voting takes the cake.

It is for that very reason why our national anthem is a joke. We are not young and free but treated as a giant kindergarten.

FrankMac59:

25 Oct 2011 3:58:25pm

This should not be considered research in the usual medical sense but an attempt to get a 'snapshot' of the health status of a large group of randomly selected Australians. As already pointed out, making this voluntary would seriously distort the resultant statistics.It is only by having such an idea that any degree of objectivity can be applied to such things as budget estimates for health care into the future.I think those who choose to portray this a nothing short of an insult on the integrity of the individual and diminution in personal freedoms should grow up and get a life.As for taking it to the High Court - sheesh!

already distorted:

chris from oz:

25 Oct 2011 4:00:42pm

If one ever needed more evidence that part of the ABC's mandate is the craven support of covert fascism in this country, this story is it. Seconded only by your jackbooted nanna/police state propaganda supporting the draconian activities of the Police against the 99% movement in Melbourne and Sydney.

Vile propagandists. I also hope that your willing cover up of the NATO war crimes and atrocious crimes against humanity in Libya hangs heavy on your consciences - those of you that have them, that is.

Down with mainstream media lies and propaganda - speed the day of your demise!

Glenn:

25 Oct 2011 4:06:24pm

This is a Government Survey conducted by public servants. At what point did anyone not realise that it would be Big Brother/Sister calling. Hasn't anyone seen BIG JULIE on TV. Power over others is all that her and her ilk are about.

Skeptic:

25 Oct 2011 4:06:55pm

The ABS, just like some of the departments such as the Immigration department, has gone mad. Little meaningless people have suddenly become very powerful because it was mandatary to "make" people do as they are told. or risk a fine of $110 per day. It reminds me of car park inspectors. Their confidence boosted by that uniform and a badge, they set out to make people's live miserable.

The Immigration department had behaved very badly and, ended up costing us money in paying compensation to the wrongfully charged persons. I just hope the government does not make too many things compulsory. The government could not impose a full scale mining tax on the big, rich and powerful companies. With us citizens is a totally different situation. We cannot afford large newspaper advertisements like the mining companies can, so it was made "compulsory" whether we like it or not.

Ronald Spencer:

Jon in Darwin:

25 Oct 2011 4:09:50pm

My understanding is that Australia no longer has conscription ... but seeing that clearly we do, if I was conscripted I would do what many former conscripts did and render myself unsuitable to be interviewed ... in this case by answering my door naked. At least I HOPE that would get rid of them...

Dr Colin Day:

25 Oct 2011 4:12:33pm

I question that even 50.00 replies to an intrusive questionaire will provide sufficient additional statistical information from that already available to the government bureaucrats in order that they may make sensible changes to the present inadequate health care siituation. The answer lies in the fact that what is needed is more medical staff and less bureacracy but this survey means even more government money being supplied to the latter and less for the former.This Federal Government has revealed its incompetence on all counts, including health concerns, and the sooner it is removed from office at an election the better.

Stressed Chef:

25 Oct 2011 4:12:55pm

I'm seriously creeped out - not by the survey, which sounds unexceptionable bar the highly excitable reporting - but by the fact that most of the people commenting on the story are so paranoid, angry and defensive. If they're representative of the community at large (always a dangerous stretch when generalising from a sample of people with nothing better to do than comment online (like me!)) then maybe the ABS should rethink its approach anyway, simply to take account of nutty misinterpreters.

So many people urge giving inaccurate answers to punish the ABS - what is the point of that exactly? The public servants get paid anyway and their work goes on - the people of Australia simply wind up with worse data to inform future health policy. Great move!

Wehrmacht:

25 Oct 2011 4:13:01pm

Well, considering the frequency with which people are told by representatives of the public health system to suffer through without any timely help, assuming you ever get helped at all, I'd love to participate in one of these surveys.

Provided, that is, that they ask if I could afford private treatment, which I can't.

The comparative health of citizens with and without private benefits. That's the information that would actually be useful.

Scott:

25 Oct 2011 4:13:24pm

Oh, grow up people. Its part of the Census. A non-compulsory Census would be meaningless. Everyone needs to calm down and stop getting so outraged over trivial things. I must say, its the overblown, hysterical responses to things like this that make me ashamed to be Australian.

dogmatic:

Colum:

25 Oct 2011 4:13:42pm

Seems like the ABS are seriously out of order here. Fines lead to non payment leads to jail... and a very expensive way to send someone off for re-housing were the rules will permit them not to disclose medical information on privacy grounds!!! The ABS can ill afford to become embroiled in compulsion such as this as it should, primarily, be concerned to protect the compulsory collection of Census data and this is itself surprisingly controversial in Australia. Distrust of government is quite prevalent with many groups of people. This news story will only serve to feed the sceptics and paranoid in the community. We like to think we live in a free society, including free from threat and harassment from government.. I am sure the cause is worthy the methodology misconceived.

Danny Boy:

25 Oct 2011 4:14:19pm

From a research methodological standpoint, it's worth questioning how valid data is, if it collected in a manner that it was coerced out of participants. It is both an unethical practice and does not fit the standardized approach to conducting research, namely that participation in research HAS to be voluntary. How do we know that this data is valid now - it was collected in a way and with a procedure that is significantly different to the standard way of collecting data. If people are forced to answer questions they feel uncomfortable asking, isn't the chances of them lying or bending the truth higher than if it were completely coluntary? Definitely. In my mind, the whole database of results either needs to be thrown out, or it's conclusions have to point out that it asked questions invasively and in a way where participants were forced to comply, thus impacting on their findings.

aktanner:

CrankyMummy:

25 Oct 2011 4:17:50pm

The Government already has a comprehensive source of medical information on every person who seeks any medical attention - your Medicare card. Hasn't anyone noticed that even when you are attending a full fee paying practice or allied health service they still take your Medicare card details? Your medical history is already collected by the Government. Millions of people attend A&E Departments in hospitals each year, why not use those? One question regarding the urine/blood samples, if they pick up a chronic or potentially debilitating disease, will the participant be notified? Will this be by a suitably qualified medical practitioner or a letter that anyone in the household can open? When we only have half the information, we have less than half the truth.

whatdoctor:

25 Oct 2011 4:20:46pm

If you knew the person asking the questions it is one thing - if they are a total stranger - who cares if they know your bits hurt when you pee? i have to agree about the option to fill it in online. This is great for those who have the Internet. I wonder why the form could not just be dropped off and picked up at a later date - like they do with the normal census form.

Hannah:

25 Oct 2011 4:25:53pm

To all those Big Bureaucracy apologists like MF ( at 2.18pm) who say "Effective public health systems depend on robust population data. This intrusion into your body measurements and fluids may contribute to development of health services for an illness that affects you some time in the future.": where does it stop ? On that logic, you woudl also advocate complusory pap smears, vaginal swabs and prostate exams because they may provide data deemed to be "valuable" for the would -be researchers and policy makers- and drug companies. Add a few mandatory breast examinations and we could compile all sorts of charts and tables that could be useful for cancer research - and lingerie distributors and the plastic surgery industry. And imagine what information could be gleaned from compulsory faecal samples. Tis the thin edge of the wedge.

No Way Jose:

Just looking at the ABS website. Despite the constant referral to standards and values, little information about them is documented or available.

Their mission statement contains the following information (just after the section on professionalism):

"Trust of Providers - we respect the contribution made by data providers to help us achieve the ABS mission - we explain why information is being collected and how it will be used - we protect the confidentiality of information provided to us - we seek to minimise the burden on providers - we consider the privacy implications of our collections and make this information publicly available"

Michael:

25 Oct 2011 4:30:47pm

The ABS forced me as a new business owner to participate in a very long survey about our company in it's first year. They threatened to make us do it every year and said they could prosecute me. After much discussion they received their form with my signature on it and with no details. All they could enforce was the signature, not the accuracy or inclusion of any data. That didn't stop them threatening legalities throughout the process. I am not surprised by this and am still unimpressed.

Tony S:

25 Oct 2011 4:31:09pm

You seem to have made a lot out of the negative comments and down played the positive comments. Lets have a bit more balence in your articles, perhaps your colleage Annabell can give you a few tips about balanced reporting. This survey is essentual if we want the government to deliver the best outcomes for everyone. This is no more than an insensative interviewer. Please do not discourage people from cooperating with this important survey.

MLX:

25 Oct 2011 4:31:11pm

Yes, this is another example of ABS invasion of privacy.I sympathise with those who were pressganged into this survey. I had similar feelings of outrage at being compelled to participate in a monthly ABS labour market over a 6 month period.My repeated requests to opt out of the survey were denied and I was threatened with fines of $110 per day until I answered the required information!This information could have been obtained from volunteers.This should not happen in our called democracy.

Tim:

Hana's Man:

25 Oct 2011 4:33:50pm

Yes I think it's an invasion of privacy and there is no way you would get me to participate in the survey.

But I find it funny how upset people are about it.

If you log into facebook and just take a stroll through some of the conversations and status updates that people post, then you'll get their full medical history, list of sexual adventures and partners and a recipe of all the alcohol and drugs they have consumed in the past year.